Messages for other people with fibromyalgia

When it comes to sharing what works with other people affected by fibromyalgia, many of the people we talked to said this can be tricky because everybody is different and what works for some people with fibromyalgia may not work for others‚Äì it’s important to find your own way of managing how it makes you feel. However, several messages and tips were given.

The key messages for other people with fibromyalgia were:

  • Try and access support groups for people with fibromyalgia. They’re going through fibromyalgia too and so they can really understand what you’re going through.

Alexis talks about the value of support groups. If you’re not told about support groups, ask about them.

Age at interview 24

Age at diagnosis 23

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I think the first thing I would say is if you’re, if you’re not told about support groups ask about them. Unfortunately you might have to do a lot of your own research to find them, but once you do find them things will be a lot easier because you’ll have people to talk to and you will realise that a lot of other people experience what you are experiencing right now.

And yeah, find, find your support group, find the people that are always going to be there for you that will always make the time to listen to you because you know, you will need them, but also you will develop a huge amount of strength and resilience that a lot of other people don’t have the opportunity to, and that is something that will be hugely important and also many, many other people will admire that and wish they had that. So yes, it’s difficult, but there are some good things that come with it.

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  • Build support networks around you. This can be can be through talking to others with fibromyalgia, but also take help and support from family and friends.
  • Be open to others, talk about how you feel and what you need. Chrissie said this can help people to get to know what your abilities are.
  • Try not to let fibromyalgia control or define you (don’t let it take over your life).
  • Accept that you have fibromyalgia. Accept what you maybe now can’t do because of your symptoms, but also explore ways to adapt and find something else that you can do.
  • Don’t give up hope. Francis said that there might be a cure around the corner and that like him, your symptoms can improve.
  • Find out as much as you can about fibromyalgia and your symptoms.
  • Care for yourself. Give yourself permission to say no to things and don’t feel guilty about doing this. Kristie said, ‘Don’t feel guilty about not feeling well’ and Emma encouraged people with fibromyalgia to ‘Be kind to yourself.’
  • Get to know your own body and what you can manage. Rosie said, ‘Know yourself. Get to know yourself and trust that you know yourself.’

Emma talks about the importance of listening to your body.

Age at interview 40

Age at diagnosis 38

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don’t ignore what your body’s telling you, get help and, and don’t be put off and get a second opinion if you’re not happy with what you’re being told, because you, you know your body better than, than anyone else, so yeah [laughs]. Be kind to yourself [laughs].

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  • Try to access a health care professional who understands fibromyalgia.
  • Try to get the care and support that you need and don’t be afraid to ask for help or to get a second opinion.
  • Keep mobile, even if this can be challenging, it will help you to keep your independence.

Chris says that you should try to accept fibromyalgia and try to keep mobile.

Age at interview 58

Age at diagnosis 43

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don’t let fibromyalgia define you. You know? Accept it, but most importantly, if and when you can, keep your mobility. it’s important that you keep your mobility. If you keep your mobility, you’ll keep your independence. Now, no matter whether you have to use crutches or sticks or whatever, it’s important that you keep your mobility.

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Aleysha says that it’s good to find out what works for you.

Age at interview 23

Age at diagnosis 22

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I think that trying to find, I think that the most important kind of aspect for people that have like maybe just been diagnosed or have had it for a long time is to build a support network and understand the condition as best you can, particularly in terms of your symptoms.

Like going to your doctor and just trying to like find out all the different kinds of medication that you can take and relying on that isn’t enough, like you have to be proactive and you have to take, like use the things that are available to you. Particularly like, like if you know that doing a lot of exercise puts you in a lot of pain and tires you out, then like play around with it, see if like If you do less exercise can you sleep better, or are you in less pain And then take your answers to a doctor, don’t rely on them to always just be like, Do thi, because most of the time it’s like, it’s just, it’s as complicated for them as it is for you, so yes.

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  • Recognise that fibromyalgia is not life-threatening. It can be manageable with good care and support.
  • Try and find something positive, it’s not all negative.

Francis says that you mustn’t give up.

Age at interview 77

Age at diagnosis 50

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Yes. I couldn’t turn a page of a book or a newspaper. But over the yearsand the medication, the vitamins and minerals it subsided. I was told to keep on thinking and walking, and sadly, in the last week my walking ability has deteriorated a little bit. But you, you can see, my speech is not good just now [smiles], the longer I go on, but my enemies say, Thank goodness his mouth is shut [laughs] Aye. Now [coughs], that’s a sad remark but you’ve got to have humour in your life. You mustn’t give up. That’s my message, no matter what
What helps you not to give up?

Humour. Humour. Our world can be a cruel place but it also can be a beautiful place, be strong. That’s my message.

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